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A new school year is a new beginning. In our house, there’s a combination of excitement and anxiety right about now. We’re coming off the high of a breakthrough summer for both Maddie and Max who spent 7 weeks at sleepaway camp. When they were each diagnosed with Tourette at the age of 5, I wouldn’t have believed this day would come. They both grew beautifully and had a great experience despite some typical homesickness and social challenges. Medications were managed seamlessly and to both the kids felt “normal” as their bunkmates were frequenting the infirmary for their own meds. So many kids take something on a regular basis which certainly helps to normalize the experience for kids like mine.

As a self-awareness junky and coach, I spent time while the kids were away reflecting on the experience of them being at camp. What I noticed was a mix of anxiety*, excitement that we could all handle the separation and the awareness that part of the reason the kids were able to go away was simply that husband and I believed they could. We had confidence that they would be okay. Who we are in our parenting (supportive, doubting, trusting, nervous…all of it) is absorbed by our children. When our child has special needs, the natural worries of raising a child become amplified. I get that on a cellular level given my own experience. What I didn’t know until I began the journey into my own inner work, is that even a parent of a child with differences gets to choose. We get a say in how we relate to them, how we relate to ourselves as their parent and how we relate to their unique journey. I choose to relate to my children as whole and perfect just the way they are. I choose to stand for them to push past discomfort and overcome obstacles with pride. I choose to notice when my own fears about who they are and who they are not are creeping into the space so that I don’t map those fears onto them. I choose to honor and embrace their differences. I choose to learn from them and to love them fully. And I choose forgiveness for myself and for them in the moments when I forget all of this.

As the new school year brings with it jitters, excitement and maybe even new tics, I invite you to become present to a new beginning, wiping the slate clean from last school year and the summer. Get intentional about who you will be as a parent; acceptance, love, strength, resilience, light, stability, belief… Boldly choose and then post reminders in places around your home where you look often: the bathroom mirror, the back of your front door, in your bedroom. Practice self-forgiveness when you forget your choice (because inevitability you will) and then get back on track.

I’ve heard from so many TS parents who have read my posts and found comfort in knowing they are not alone. I am grateful for the opportunity to support others on a similar journey. As always, I am happy to chat, to provide some mentoring or to simply listen. As a Mom who gets it, sometimes just knowing that you’re not alone is enough to get through a rough patch.

*Yeh…anxiety is a part of me. What if they aren’t happy? What if their tics flare and they are made fun of? What if they don’t get enough sleep and they become overly emotionally as a results? What if… What if… What if….

Recently an old friend from college reached out to me after seeing my first NJCTS blog post. We hadn’t spoken in well over 10 years and we were both surprised by this new common bond we had. Her oldest daughter was just diagnosed with Tourette syndrome at age 7. My friend was looking for some support, still processing her daughter’s diagnosis and still reeling from the shock. She wanted to know about our experience having two children with TS. How old were my kids when they were diagnosed? What were their initial symptoms? How are they doing now? Are they on medication? Which ones? Are they in therapy? How’s it going? How about school? Do they have special accommodations? We immediately knew that a 20 mins phone call wasn’t going to cut it! We need more time and we are in the process of creating that. This experience gave me the idea to write a new blog post. Perhaps other parents of the newly diagnosed had similar questions.

I vividly remember the sinking feeling in my stomach during the early days of Maddie’s diagnosis. I vacillated between worrying about her future, sadness watching her tic (ironically she wasn’t bothered by most of them) and heartbreak that my “normal healthy child” was no longer either of these things. What got me through was the support of other parents. Hearing how well other kids were doing years after diagnosis gave me comfort, relief and strength. So here I am to tell you that both of my children are doing incredibly well. They are thriving in school, very social with lots of friends and active in sports and other community activities.

As a recovering “doer,” after Maddie was diagnosed, I jumped into massive action. I searched high and low for ways to manage/reduce tics. I came across all kinds of recommendations and books. We started with dietary changes. Although a gluten and dairy free diet made no difference, cutting out food dyes and artificial colors did. Limiting chocolate intake and reducing sweets seemed to make an impact as well.
I noticed that after Maddie would recover from an illness, her tics would go into overdrive. I began to research different ways to build the immune system to protect her from getting sick so frequently. As a daycare kid from 4 months of age, Maddie was always fighting something. My friend who is a pharmacist supported me in getting Maddie on a great natural multivitamin, fish oil, a powerful probiotic (gut health is apparently linked to brain function), vitamin c and magnesium. The vitamin section at Whole Foods became a frequent stop for me. We also had Maddie’s tonsils removed. Maddie had 9 bouts of strep by age 6. She was actually diagnosed with PANDAS by one of the three neurologists we took her to. My husband and I noticed a big (and positive) difference in the frequency of her illnesses with these changes. That said, definitely consult your doctor before starting your child on a vitamin regimen. This certainly is not my area of expertise.

The next important area we focused on was school. We immediately got Maddie a tutor (to build her frustration tolerance) and a 504 plan. Some of her accommodations are:
• Provide instruction in a calm, structured setting
• Modify homework assignments as needed
• Energy breaks as needed
• Inform all staff members who have contact with Maddie including substitute teachers of her diagnosis to better understand Maddie’s needs
• Provide a private location (counseling office or nurse’s office) to let tics out and/or emotional release as needed
• Provide staff development on Tourette’s syndrome as to increase awareness and education
• Provide progress monitoring for academic and social/emotional needs reported to parents 2 times per month
• Utilized alternative space for testing taking (study carrel, small table)
• When appropriate provide study guides
• Provide student support to help dissipate tic urges (ie stress ball, chewing gum, hard candy to suck on, etc)
• Provide student support in organization of locker and binders 2x monthly
• Encourage asking for help if needed or if she does not know the answer to a question
• Consultation with guidance counselor 2x per month for September and October
• Modify assessments for spacing in order to make assessment for visually manageable (ie. Reduce the number of math problems on page, reduce the number of graphics, reduce the number of tasks per page, etc.)

Next, my husband and I spoke with Maddie’s neurologist about medication. He recommended that we think about how we would know it was time (if ever) to treat Maddie with medication. My husband and I decided that we would revisit medication if any of three areas of Maddie’s life became negatively impacted by her tics and/or co-morbid anxiety disorder and OCD like behavior. These three areas were: sleep, social and academic. I wrote a letter to the neurologist explaining our rationale. In truth this was more for me than for him. I wanted him to hold me accountable to what I said if/when the day came. Medicating my child was not easy and I was very frightened at the prospect. I needed someone to hold me to my word and not allow me to push treatment off out of fear.
Finally, came counseling for both Maddie and me. We were very blessed to find great therapists. Maddie worked with Dr. Lori Rockmore in Millburn, NJ. Dr. Rockmore taught us about Exposure Therapy. At age 6, this type of therapy worked wonders for Maddie. Her triggers were largely around clothing at that age – a jean skirt that laid funny on her waist, her socks needing to lay perfectly straight on her toes. Dr. Rockmore explained that the earlier we started with Exposure Therapy, the more effective it would be in the future. After success with Dr. Rockmore, when my husband and I start noticing new obsessive behaviors/fears, we began quickly implementing Exposure Therapy. We’ve been fortunate to catch the behaviors early and successfully intervene. Incredibly, through some networking, I was referred to a therapist for me that works with parents of children with TS, Gayle Forman, LCSW, ACSW, MSW. TS is one of Gayle’s areas of expertise and she met me with patience, compassion and strategies to get through flare-ups.

Our journey has been and continues to be unique to us. Our son’s experience of TS has been similar but certainly not the same as our daughters. My intention is to support other parents in their journey. As always, feel free to reach out to me at any time. My commitment is to support other parents through early diagnosis and challenges related to their child’s experience with TS.

In the blink of an eye, the holidays are here again. The excitement and anticipation this time of year can be particularly challenging for children with special needs and naturally, their parents. Children are faced with so much stimulation, impulses are difficult to suppress, schools are closed and schedule changes throw everyone off. I could go on… But what if you could put down (or cut in half) your anxiety and worry about what will be this holiday season? What would that make possible? What does it look like in your mind’s eye to have the holidays go a different? I invite you to consider.

I have declared the next 30 days “Worry Free Living Month”. In fact, I have even enrolled my daughter in the practice. You see, I struggle with anxiety. Always have. I’m a natural worrier and the older I get, the more practice I have with it. I’m an A+ student at this point. Here’s the thing though, 85% of what we worry about never happens. And even when it does, it’s typically not nearly as difficult to handle as we think it will be. So, I’m basically wasting a whole lot of time and energy worrying with little return on my investment. Actually, it has cost me more than I’d like to admit over the years: time, energy, money, relationships, inner peace, health, connection, productivity, gratitude, happiness.

Through my Coach Training Program and now as a Mentor Coach with Accomplishment Coaching, my worrying has been a frequent topic of conversation with the program facilitators, my coach and my coaching colleagues. I’ve never been proud of it but until now I was unable to grasp how insidious it has become in my life. After a year and half of growth as a practicing coach, I am committed to taking on this shadowy part of me in service of my clients, my children, my husband and myself. I am committed to creating a holiday season where we can just be together as a family, being with what is and what is not. Energy once spent trying to change, control and manage will be channeled towards gratitude, appreciation and being in the present moment. The thing is that there’s an urgency for me to tackle this. Having two children with their own anxiety, I am crystal clear that staying in my cycle of worry send the clear message to my children that this is THE way to “do” life. They must feel, see, hear and experience something different so that they see that they get to choose how it will go for them.

Do you see something available for yourself in dropping the worry? I welcome you to take the trip alongside me. So that I can support you, please post your declaration in the comments section!

You may be thinking this all sounds great but it will never work for you. Or, it sounds great but you can’t figure out how to make the change. While there is absolutely no “right” way to go about making this shift, here are the steps I’ve carved out for myself. You get to decide your path as the ultimate expert in your own life.

Worrying is a bad habit. And, like any other habit, forming a new one requires gaining clarity on the purpose letting go of the worry.

What will life look like without worry? What will dropping the worry make possible that isn’t possible today?

By writing down the answers to these questions, and revisiting them over the course of the month, I will continue to re-present myself to what I truly want.

Next, I will generate awareness around my worry.

When does it happen? How do I know when it’s happening?

What purpose does it serve for me?

Becoming mindful of my worry might include writing down every time I have a worried thought or recording the number of times I worry in an hour.

Next, enlisting the support of a loved one or friend to keep me accountable.

Support can take any form. My husband, mother and daughter will all be charged with holding me accountable at my request. My husband will remind me twice a day in person, my mom over the phone each morning and my daughter via text at least once a day.

Finally, as a recovering perfectionist, having compassion for myself when I backslide is going to be of utmost importance. No worrying about worrying allowed.

And with that, I’m off…Happy Holidays!

As a reminder, I’m the mother of two children with TS. I am committed to be of service to other parents in the NJCTS community. I’ll do this by sharing my own experiences on the blog and by providing complimentary parent coaching. Please contact me for support.

During my yoga practice this weekend, my teacher Jess shared something that got me thinking. She said that at the end of her pregnancy with her twins, she was up 80 pounds and feeling out of sorts with her body. I can only imagine. Jess’ friend, whom I assume is another yogi, commented on how wonderful this was. Jess must have looked at her dumbfounded. What could be great about all this weight gain? About feeling like her body was alien to her? About knowing what lay ahead to get back in shape once she gave birth? Jess’ friend explained further. She said that now Jess had the gift of understanding her ill, overweight and out of shape students in a new and profound way because she herself had experienced something similar. Looking at Jess today you’d never know what she went through. When she teaches though, she shares her experiences from the heart, relates from a place of purity and connection to all of her students no matter where they are with their practice, their body, their mind. It doesn’t matter. It hit me that this level of empathy and ability to support her students through the actual asana and the emotional blocks is possible because of Jess’ journey, not in spite of it. No training or book could have prepared Jess the way personal experience has. So why do I share this story you may wonder? Simply put, I see my own journey in Jess’.

In June of 2010, my 5 year old daughter was diagnosed with Tourette Syndrome. The diagnosis came after months of desperately trying to figure out what was wrong with her. The months leading up to the diagnosis were filled with doctor’s visits, conversations with other parents, reading books and of course MANY Google searches on tics, anxiety, rage disorder, neurologists, vitamin regiments, dietary changes… I felt alone, petrified of the future, dreading the diagnosis I was pretty sure we’d be getting. Continue reading →

My name is Vanessa, and my 7 year old daughter, Angelina was recently diagnosed with Tourettes, ADHD, OCD, anxiety, and a possible language processing delay. Her symptoms are on the mild side. I am new to all this and I have many questions. Talking to other parents going through the same thing is the best way to learn about all this.

The purpose of this research study is to evaluate the effects an “investigational” drug (ecopipam) has on tics in subjects aged 7-17 years with Tourette syndrome (TS). Investigator: Roger Kurlan, MD

Multimodal Dietary Treatment in Tourette syndrome

This study is open to patients ages 12 -18 with Tourette syndrome (TS) and aims to evaluate whether a multimodal dietary approach will improve the symptoms of TS. Investigator: Roger Kurlan, MD

A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

This study is open to children and adolescents ages 6-17 who have Tourette syndrome (TS), and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

Adult Tourette Trials

A Randomized, Double-blind, Placebo-controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

This study is open to adults ages 18-64 who have Tourette syndrome (TS) and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

Editor’s note: We welcome blogger AndreaF back to TSParentsOnline with a follow-up to her popular post from a few years ago. What are your experiences with these methods to reduce tics? We’d love to hear from you.

A few years later, and with more research, I have decided to update the list a bit for new parents who keep writing me with the same question.

Question: How do I fix the tics?

Answer: There is no one-size-fits all answer. Every child is different.

What Can You Do If You’re Freaking Out About Tics?

I’m no doctor, but after 10 years at this I can passionately state that all kids tic for a variety of reasons. I, personally, didn’t feel medication was the answer right off the bat for my son. It still isn’t. If it got severe enough, of course I would consider it, but so far it has not.

Here’s what I tell all parents who write me with concerns over their ticking kids. I tell them to ask a few important questions – the same ones I asked myself.

Questions to Ask if Your Child is Ticking

Could there be vitamin deficiencies happening?

What kind of environmental stressors could be worked on? (Less tension at home, less electronics?, etc.)

How much sleep is your child getting?

What kind of exercise is your child getting?

What does your child’s diet consist of?

It’s Up To You!

None of these questions are meant to either shame or suggest there are simple answers for complicated tic issues. Again, each child is different. My suggestion is to go to a naturopath and have your child evaluated for his/her individual condition. If you are low on funds (which I was) you can start with the basics and see if this helps. It helped in our case and I hope it helps in yours!

5 Things to Help With Tics

Magnesium: I gave my son 500 mg of magnesium a day, and it really helped with his eye rolls and vocals. For some little kids this might be too much, but I’ve been told the worst thing excess magnesium can do is cause diarrhea. Now my son takes a calcium/magnesium supplement as the magnesium is best absorbed with calcium. The ratio is double the calcium to the magnesium.

Gluten Free: It was a pain, but it helped, and continues to help enormously. He can concentrate more and can fall asleep quickly. When he was not gluten free, it would take hours for him to settle down. He is still a high energy kid, but much less so now.

Dairy Free: Ditto the gluten. It was a pain, but we’ve found many ways to supplement his calcium through rice milk, vegetables and fruit.

Sleep: 10 hours of sleep a night is crucial and a huge tic reducer.

No artificial flavors or preservatives: My son is very sensitive to chemicals. They can set tics off like bees around a honey pot. Not worth the sting of excess tics except on special occasions.

2 Other Supplements * Talk to you Naturopath first *

6. NAC – Standing for N-Acetylcysteine, this is an amino acid that can be purchased at any vitamin store. This natural supplement acts as an antioxidant and glutamate modulating agent.

According to this webinar, featuring Dr. Mark Mintz, “They (a study) found the N-acetyl cysteine decreased symptoms of trichotillomania (hair pulling) compared to placebo. It makes theoretical sense as NAC can modulate dopamine. So, there are reports that NAC can improve mood disorders as well (such as obsessive compulsive disorder). There needs to be more research and reports to have a better handle on the effects of NAC in Tourette, but it appears to show some promise.”

7. Taurine – I talk about Taurine here. My son is currently on 500 MG but I think he could use 1000. That said, I will talk to my naturopath first!

What have been your experiences with tics? Did any of you find it made a difference for your children? What about in some of your cases where tics were more severe? Would love to hear!

Until next time, may God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB.

Change the world. Stand With The GreaTS! Join the global community to break down social stigmas, create awareness, and provide support resources around Tourette Syndrome. This is your chance to make a difference. Get involved today at standwiththegreats.org. Share your message of support using #standwiththegreats.

Hello, my name is Candy. I am the mother of three kids and my oldest son, 23 years old, has ADD. My daughter, 16 years old, is doing great in school. And my youngest is 9 1/2 and he has ADHD and was just diagnosed with TS. I’m a bit overwhelmed with it all, and having in-laws whom cannot except anything that there is anything wrong. They don’t know about the TS yet. My husband is also hard to except this as well. I feel like I’m going to battle alone! Any help would be wonderful. Thank you for your time and I hope to hear from you soon.